Alone in autism 

The numbers are startling: As many as one out of 166 children will develop autism. While researchers struggle to find out why, parents and their kids struggle to cope.

Mary Grace Mauney leans back and stretches her legs out toward the sky. The squeaky chains get louder as she pushes forward, and her long, dark strands of hair blow past her haunting blue eyes. For a moment, her backside leaves the yellow seat of the swing as she lifts off into the air. She methodically pulls her splayed legs back, flexing her hamstrings, and her body follows, swaying past the wooden bars. Her forearms wrap around the chains. She revs up her legs again and continues to soar.

click to enlarge IN MOTION: Mary Grace is soothed by the flight of a swing. - JOEFF DAVIS
  • Joeff Davis
  • IN MOTION: Mary Grace is soothed by the flight of a swing.

The constant back and forth motion soothes her. It's a motion she can control, unlike some of her other thoughts and actions. Sometimes she likes to sway slowly, her heels grazing the bottom of the matted dirt in her back yard. She can twirl, too, twisting her knees back and forth. Other times, she'll just sit -- grasping the chains and slowly rocking. But when she gets the swing going, really going, it's like she's vaulting over the treetops and leaving earth, until gravity pulls her back down.

Mary Grace, who is 16, has been swinging on the set as long as she can remember. It's been reinforced four times as she's grown from child to teenager. It's her place to think, to get so deep inside herself that the world seems to disappear. It doesn't matter if the temperature is 20 degrees or 90 degrees. Mary Grace swings almost every day to think about things, or else to forget about things and just get lost in the motion. She can reach the sky as many times as she wants. Sometimes she'll swing for hours before her feet gently touch the dirt and she comes to a halt. It's time to return to reality.

Much of Mary Grace's life is defined by the fact that she suffers from autism. When she was born, about one in 2,000 children developed the disorder. Today, autism is the second leading cause of disability in children, behind mental retardation. According to the Autism Society of America, as many as one out of every 166 children born today is autistic. The condition affects up to 1.5 million people nationwide and is the fastest-growing developmental disability; in the '90s alone, instances of autism rose 172 percent.

Autism impairs a person's ability to interact and communicate effectively. It carries a variety of symptoms, with no one-size-fits-all diagnosis. Autistic individuals often appear to be in their own world. They exhibit bizarre behaviors and usually have a secondary disability, such as mental retardation or epilepsy, that further muddles the signs of the disorder. Some, like Mary Grace, suffer from a lesser variation known as Asperger's disorder and can learn to function in society. Others need round-the-clock care. And most individuals with autism are somewhere in between.

What's frightening is that scientists don't know what causes the disease, or why the number of autistic children has spiked so dramatically over the past 20 years. "Research is pointing to a combination of genetic and environmental factors," says Jose Cordero, director of the National Center on Birth Defects and Developmental Disabilities. "Finding the cause is our highest priority."

The explosion in autism affects every corner of society. The increase has stressed social services, and caused government and community providers to scramble to catch up with the needs of a growing disabled population. It's put a strain on public school systems vying for dollars to support such kids. It's placed a burden on taxpayers, which will only become greater. The estimated annual cost of autism nationwide is $90 billion, with 90 percent of that amount coming from adult services. And that number is expected to rise to as much as $400 billion over the next 10 years.

It's also caused tension in the disability advocate community as providers try to find ways to engage autistic people or find them a job as they reach adulthood.

"The adult world presumes kids are ready to go once they leave school," says Sheila Wagner, assistant director of the Emory Autism Center. "Yet people with autism need continued education and support. And there's not a level of services and options for what they need."

Especially as the autistic population soars.

Claire Dees sensed something was wrong when her son, Blake, was an infant. People would coo at him, and he'd stare off in a different direction. Claire and her husband, Mark, already had two other children. They knew kids loved that kind of attention and that they reacted to it. And their other two children had learned to crawl at six months; Blake had yet to even try at the same age.

Doctors told Claire and Mark that Blake would come around, that he was a typical youngest child, a late bloomer. But Claire knew something wasn't right. When Blake did begin to crawl, he'd sometimes search for the tiniest speck of dust on the rug and put it in his mouth. Other times, he'd sit on his knees and rock silently with an empty gaze. "He seemed to be a little dull, not real alert," Claire says.


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